“My everyday life has returned to normal”- Experiences of patients and relatives with a palliative day care clinic: a qualitative evaluation study

Abstract

Abstract Purpose Palliative day care clinics (PDCCs) complement inpatient and home palliative care and provide access to a range of multi-professional services. However, they are not part of standard care in Germany. Yet, international studies show that PDCCs have a positive impact on e.g. quality of life. To evaluate one of the first PDCCs in Germany (Aschaffenburg-Alzenau (PDCC-AA)) by describing the experiences, satisfaction, challenges, wishes of patients and relatives and possible alternatives to treatment in the PDCC. Methods Qualitative study using semi-structured telephone interviews. Data was analyzed using qualitative structuring content analysis according to Kuckartz with deductive a priori categories and inductive subcategories. Results A total of 31 patients and 38 relatives completed telephone interviews. The majority of patients were diagnosed with a cancer or tumor disease. The following four main themes emerged: (1) alternatives to treatment at the PDCC, (2) symptom relief, (3) sense of security, (4) “everyday life framing” (normality of everyday life). Participants valued the medical treatment (especially for pain), psychosocial support given and having direct access to a range of services (e.g., wound care and pleural drainage), while relatives valued being provided respite services. A sense of security, availability of therapies, and devoted time that healthcare providers spent to explain e.g., treatment options were mentioned most positively, as well as confidence in dealing with the illness. As to whether there was an alternative to treatment in the PDCC, some saw further inpatient stays, the emergency room or care by general practitioners as options (although not preferred). Patients expressed concern that they were not treated and informed according to their needs in other care settings. Conclusions PDCCs may close a gap between inpatient and home palliative care. Participants mentioned that hospital stays can be delayed or even prevented.